Design of the Swiss Spinal Cord Injury Cohort Study

Post, Marcel W.M.; Brinkhof, Martin W. G.; Elm, Erik von; Boldt, Christine; Brach, Mirjam; Fekete, Christine; Eriks‐Hoogland, Inge; Curt, Armin; Stucki, Gerold

doi:10.1097/phm.0b013e318230fd41

Cited by 143 publications

(167 citation statements)

References 59 publications

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“…An operational definition for benchmarks could be the percentage of an SCI population in an area meeting the guidelines [42], which is expected to be relatively stable in the absence of PA interventions [43]. Although population-based baseline estimates of PA in adults with SCI have been undertaken in some regions [44][45][46], and are underway in some European countries [47], to the panel's knowledge, PA is not being monitored in people with SCI on a national or international level. Possibilities for nationwide PA surveys need to be explored in other countries, or at least possibilities for tracking PA in cohorts of adults with SCI (e.g., patients who are part of registries, Paralympic athletes).…”

Section: Monitoring/auditing Criteria [Surveillance]mentioning

confidence: 99%

Evidence-based scientific exercise guidelines for adults with spinal cord injury: an update and a new guideline

et al. 2017

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Objectives To describe the process and outcomes of using a new evidence base to develop scientific guidelines that specify the type and minimum dose of exercise necessary to improve fitness and cardiometabolic health in adults with spinal cord injury (SCI). Setting International. Methods Using Appraisal of Guidelines, Research and Evaluation (AGREE) II reporting criteria, steps included (a) determining the guidelines' scope; (b) conducting a systematic review of relevant literature; (c) holding three consensus panel meetings (European, Canadian and International) to formulate the guidelines; (d) obtaining stakeholder feedback; and (e) process evaluation by an AGREE II consultant. Stakeholders were actively involved in steps (c) and (d). Results For cardiorespiratory fitness and muscle strength benefits, adults with a SCI should engage in at least 20 min of moderate to vigorous intensity aerobic exercise 2 times per week AND 3 sets of strength exercises for each major functioning muscle group, at a moderate to vigorous intensity, 2 times per week (strong recommendation). For cardiometabolic health benefits, adults with a SCI are suggested to engage in at least 30 min of moderate to vigorous intensity aerobic exercise 3 times per week (conditional recommendation). Conclusions Through a systematic, rigorous, and participatory process involving international scientists and stakeholders, a new exercise guideline was formulated for cardiometabolic health benefits. A previously published SCI guideline was endorsed for achieving fitness benefits. These guidelines represent an important step toward international harmonization of exercise guidelines for adults with SCI, and a foundation for developing exercise policies and programs for people with SCI around the world.

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Section: Monitoring/auditing Criteria [Surveillance]mentioning

confidence: 99%

Evidence-based scientific exercise guidelines for adults with spinal cord injury: an update and a new guideline

et al. 2017

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“…Several complex items or response categories were decomposed to facilitate self-reporting. This included SCIM III items with several statements in one answering option (items 6 and 7) or with more than six answering options (items 5,[12][13][14]. Scoring algorithms were developed to obtain scores from these decomposed items that are consistent with SCIM III scores.…”

Section: Instrument Developmentmentioning

confidence: 99%

Development and validation of a self-report version of the Spinal Cord Independence Measure (SCIM III)

et al. 2012

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Study design: Cross-sectional validation study. Objectives: To develop and validate a self-report version of the Spinal Cord Independence Measure (SCIM III). Setting: Two SCI rehabilitation facilities in Switzerland. Methods: SCIM III comprises 19 questions on daily tasks with a total score between 0 and 100 and subscales for 'self-care', 'respiration & sphincter management' and 'mobility'. A self-report version (SCIM-SR) was developed by expert discussions and pretests in individuals with spinal cord injury (SCI) using a German translation. A convenience sample of 99 inpatients with SCI was recruited. SCIM-SR data were analyzed together with SCIM III data obtained from attending health professionals. Results: High correlations between SCIM III and SCIM-SR were observed. Pearson's r for the total score was 0.87 (95% confidence interval ( INTRODUCTIONThe Spinal Cord Independence Measure (SCIM), which was first published in 1997, 1 has become a widely used instrument to measure functioning in activities of daily living in persons with spinal cord injury (SCI). 2 Its main advantages over other instruments used for functional assessment in rehabilitation medicine are its sensitivity to changes in performance of tasks that are relevant for SCI patients, and the fact that it measures not only the burden of care, but also achievements, which have medical, psychological or social relevance for the SCI patient. The third version of the instrument, SCIM III, has been tested for validity and reliability in multicenter studies with satisfying psychometric properties. [3][4][5] SCIM III comprises items on 19 daily tasks grouped into three subscales. Item scores are weighted according to their clinical relevance and are graded for increasing difficulty, that is, requiring higher ability of the person with SCI. Each item has between 2 and 9 grades. The total SCIM III score ranges between 0 and 100, higher scores reflecting higher levels of performance or independence of a person. 3 The three subscales assess the areas of 'self-care' (six items, range 0-20), 'respiration & sphincter management' (four items, range 0-40) and 'mobility' (nine items, range 0-40).SCIM III is scored in observation of persons with SCI by health professionals. Ideally, each subscale is scored by clinical staff experienced in the assessment of the activities covered by the subscale. Such observations are time consuming and mainly applicable in inpatient settings. 6 In the outpatient setting, SCIM III data were collected by a single rater or in interviews previously, although with slightly decreased precision. 7,8 For research purposes, SCIM data are obtained by interview as part of the regular follow-up of large international studies, such as the European Multicenter Study about Spinal Cord Injury (EMSCI). 9 Studies conducted in the SCI community usually rely on selfadministered questionnaires for data collection. This method requires comparatively few resources, provides fast data collection and is applicable independent of the setting. 6,10 Using...

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“…45 One large epidemiologic study that looks at SCI from a comprehensive perspective is the Swiss Spinal Cord Injury Study (SwiSCI). 27 It is focused on understanding and improving the living experience of persons with SCI from the moment of injury to reintegration into society, with consideration of other long-term conditions including ageing. SwiSCI aims to accumulate evidence for better understanding of functioning, health maintenance, and quality of life of persons with SCI along the continuum of care, in the community and along their life span.…”

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…It should cover not only disease-related characteristics of affected people, but also the positive and negative influences of environmental and personal factors. 27 These data would be the starting point for implementation of the UNCRPD with regard to persons with SCI.Many studies in Poland have focused on particular aspects of SCI epidemiology. However, there are currently no studies that look at SCI from a comprehensive perspective or summarize the available evidence for the country.…”

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confidence: 99%

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Need for a comprehensive epidemiologic study of spinal cord injury in Poland: findings from a systematic review

et al. 2013

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Objective: To review and assess the quality of available epidemiologic data of spinal cord injury (SCI) in Poland in the context of general International Classification of Functioning (ICF) domains and to answer the question whether there is a need for a comprehensive epidemiologic study of SCI in Poland. Methods: Databases Medline, Embase and Polish Medical Bibliography were searched using keywords 'spinal cord injury', 'paraplegia', 'tetraplegia' and 'Poland'. Inclusion criteria: studies on humans, original papers, publication in 1979 or later. Case reports and studies with unclear inclusion criteria or performed on a population other than Polish were excluded. Full texts were reviewed for data on incidence, prevalence, etiology, mortality, natural history and outcome of comprehensive treatment. Quality of studies was assessed according to the modified Downs and Black criteria. The ICF model was applied to group the studies according to the ICF components. Results: Out of 536 identified papers, 224 articles were extracted and reviewed. Mean quality score was 11.04 points based on a 28-grade scale. Body functions and structures were assessed in 81.6%, activities in 22.4%, participation in 14.8%, environmental factors in 15.2% and personal factors in 47% of the studies reviewed. Conclusion: Current epidemiologic data on SCI in Poland are insufficient and biased toward biomedical aspects. There is a need to develop a long-term research strategy for SCI in Poland in the form of a comprehensive cohort study. Spinal Cord (2013) 51, 802-808; doi:10.1038/sc.2013.105; published online 17 September 2013Keywords: spinal cord injury; Poland; paraplegia; tetraplegia INTRODUCTIONMany people with disabilities worldwide, including those in Poland, do not have equal access to health care, education, employment and experience exclusion from activities of everyday life. 1 On 6 September 2012, Poland ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which aims to ensure the equality of rights and opportunities for persons with disabilities. 2 Disability associated with spinal cord injury (SCI) is serious and can last a lifetime. All organs and systems below the level of lesion can be affected. In addition to the loss of sensory and somatic functions, a wide range of other functional and structural problems is observed in individuals with SCI. These may include cardiovascular and respiratory problems, spasticity, neurogenic bladder and bowel, sexual dysfunction and neurogenic pain. SCI also increases the risk of respiratory and urinary complications, pressure sores, gastrointestinal bleeding, osteoporosis, male infertility, diabetes mellitus, ischemic heart disease, depression and suicide. SCI affects health-related quality of life and is associated with increased preterm mortality. [3][4][5][6][7][8][9][10][11][12][13][14][15][16][17][18] Health and social care expenditure related to SCI varies according to severity of injury, but is generally high. Inpatient rehabilitation appears to be ...

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Design of the Swiss Spinal Cord Injury Cohort Study

Cited by 143 publications

References 59 publications

Evidence-based scientific exercise guidelines for adults with spinal cord injury: an update and a new guideline

Evidence-based scientific exercise guidelines for adults with spinal cord injury: an update and a new guideline

Development and validation of a self-report version of the Spinal Cord Independence Measure (SCIM III)

Need for a comprehensive epidemiologic study of spinal cord injury in Poland: findings from a systematic review

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